ME and you

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    Mary-Jane Willows explains how schools can support pupils with ME 

    What’s the biggest cause of health-related long-term school absence? The answer may surprise you. It is, in fact, myalgic encephalomyelitis (ME) – sometimes diagnosed as chronic fatigue syndrome (CFS or ME/CFS).

    ME is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. ME affects an estimated 250,000 people in the UK, and around 17 million people worldwide.

    People with ME experience debilitating pain, fatigue and a range of other symptoms associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of energy.

    There’s much we don’t yet know about this serious systemic illness, including what causes it or how to cure it. It’s also hard to put an accurate number on just how many children and young people have ME; prevalence rates vary widely, up to as high as three per cent of under 18s. But even if schools only have one student with ME, they have an essential role to play in offering the right support at the right time.

    Here are some of the key things educators can do to support families with this debilitating illness.

    Understand the impact

    One of the biggest problems highlighted by parents is that some education professionals refuse to believe their child has ME. Even with a clear diagnosis, schools and local authorities will sometimes refuse to provide the individual healthcare plan (IHCP) that a young person is legally entitled to. At worst, authorities can even take families to court for their child’s poor attendance.

    By accepting the reality of ME, and encouraging your colleagues to do the same, you can make a huge difference and dispel some of the stigma that still comes with this “invisible illness”.

    Listen and learn

    The child or young person with ME is the expert, so they and their parent/carer will be able to tell you just how ME affects them. This won’t be the same in every case, as ME is a fluctuating condition and can vary in severity and symptoms over time, from individual to individual.

    It is important to support children and young people to manage their symptoms in a way that assists not just attending and moving forward with school, but also maintaining relationships with family and friends, and keeping up with the hobbies and activities.

    Identifying ME

    Although symptoms of ME can vary greatly, there are some common factors you should be aware of:

    • ME is not feeling tired; the fatigue that comes with ME is totally different from “normal” exhaustion and can fluctuate quite markedly throughout the day 
    • young people with ME frequently experience pain, including headaches and muscle and joint pain without redness or swelling, especially in the legs 
    • what people with ME call “brain fog” is common – a catch-all term for mental confusion and difficulties with concentration, memory and word-finding
    • post-exertional malaise is the delayed response to any physical, mental or emotional activity – often by one or two days; children with ME must manage their energy very carefully to avoid having a “crash”
    • young people say the isolation associated with ME can be even worse than its symptoms.

    Be realistic

    This is a condition that varies in severity and in some cases a child or young person with ME will be considered disabled as described under the Equality Act 2010.

    Teaching and supporting a child with this complex condition can be challenging, and they may well struggle to keep up with school work. Their attendance can also go up and down. This can lead to misunderstandings which can even escalate to the point where safeguarding proceedings are initiated, putting even more pressure on families. This situation can be avoided by learning about ME and its potential impact.

    For example, 11-year-old Sam* attends school for an hour a day. This includes not only lesson time, but also social time with her friends. Sam’s school has been supportive in many ways, but it is keen to increase the time she is attending school, and increase it very quickly.“Keeping Sam positive and moving forward means not pushing her too hard; the minute that happens, she is undone”, says Sam’s mum. “It’s a constant balancing act and it’s frustrating having to explain this over and over again.”

    Accepting the limitations of ME and agreeing realistic targets will help students and their families cope with the demands it imposes. Some may need to access education at home, through digital technology or with a tutor, and some may be too ill to access it at all.

    Seek expert advice

    Teachers, SENCOs, school nurses and all school staff can benefit from talking to experts in ME. Being completely honest with them will enable the experts to dispel many of the myths that still surround ME.

    One school was helped to work with a family and GP to put an IHCP in place for ten-year-old Joe*. They found a rest space in the library and ensured that every teacher involved with Joe had the information required in the IHCP. They created time-out cards and Joe was allowed volunteer buddies to carry his bags and push his wheelchair between classes. Small steps can make a big difference.

    Oliver’s story

    Oliver, aged 13, lives in North Yorkshire and has ME. He explains how the right support is helping him to manage his ME:

    “A consistent TA that understands has enabled me to attend school. Initially, I went for just 20 minutes once a week and very, very gradually increased this. I can now do almost a full lesson, P3, as this is the best time of day for me and gives me time to get ready to go and rest before my brother comes home.

    “I use a wheelchair for school and avoid the busy, noisy times when classes are changing, going in before the class starts and leaving before it finishes. My TA stays with me; she helps with my coordination difficulties and reads/copies from the board for me. I am allowed to wear jog pants and a T-shirt; they are more comfortable and easier to manage, as I can’t fasten buttons very well.

    “My home tuition had been just two days a week for 10 to 20 minutes. I can now do nearly an hour on Monday and Thursday, which is brilliant, though after my visit to school on Tuesday I find I can’t concentrate or coordinate to do as much on Wednesday.” 

    About the author

    Mary-Jane Willows is Head of Children and Young People’s Services at Action for ME. Her team support families to access peer-support, health, education and social care services. 

     actionforme.org.uk/teachers

     @actionforme

     @actionforme

    * Names have been changed.

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